personal project: St Jude Performance Team

by

Cancer does not discriminate. It does not know gender nor race, and somehow the most cruel: cancer does not know age.

I had the recent honor of photographing at St Jude Children’s Research Hospital in Memphis, documenting fragile lives and tremendous courage. I traveled with members of the Fitness for a Cure performance team from Nashua, New Hampshire, and Andover, Massachusetts, a hip hop fitness troupe that has raised more than one million dollars for St Jude through fundraising efforts over the last 10 years. You might recall from my blog that I have been documenting their annual fitness show for the last four years, after an introduction from my stepmother Paula who is on the group’s planning committee. Tho the team in its entirety comprises more than 100 members with ages ranging from 5-50, there were 40 that made this journey south to share their high energy dance routine with the hospital’s ill children.

Sounds simple, right? Holy cow, not so! The experience was so deep and life-changing that I am not convinced I will ever be the same. Explaining its effects are difficult, and different every day, but I will do my best to share...

My business generally consumes my life and leaves me little free time to pursue other interests outside of my daily routine. When Fitness for a Cure’s founder Sherri Laffey Sarrouf, wife of St Jude’s Chairman of the ALSAC Board of Directors Camille Sarrouf Jr., invited me to come along with the team on a rare week with a free Saturday during wedding season, I jumped at the opportunity. I am often solicited to donate portrait sessions for charity auctions and such but hate feeling disconnected from what my work is actually benefiting. The burning desire to help first-hand is what prompted me to start my own non-profit for breast cancer, Pink Initiative, and why I knew I couldn’t say no to Sherri. How simply awesome to share my skill to capture such a hugely important story so different, yet still similar, from the I Dos I document each weekend.

With small pangs of guilt for walking away from work for five days, I hopped a bus to Boston and met the team at Logan airport to begin this incredible journey. I had heard bits of what to expect from those who had gone before (they visit every other spring) but knew nothing could truly prepare me for the unknown.

When we arrived on campus, I was first struck by the corporate beauty of the buildings. There was nothing that hinted “hospital” anywhere, minus the young girl I spotted walking the lush grounds with her father, her without hair and him with a matching shaved head, talking and smiling as they strolled hand-in-hand. My eyes welled up for them but their smiles spoke a deeper hope that would be present in our every minute of the visit.

Inside, every wall of the hospital showcases a beautiful mural of a cityscape, season, sport or fantasy world of happiness and healing much like an elementary school. Inside a typical hospital I always feel the presence of sickness. Here, frequent hand sanitizer dispensers and occasional masks were the only obvious reminders of germs.

The staff, as I anticipated, was lovely and kind, and treated the team as celebrities as we paraded about in our uniforms, many often stopping to thank us. I hardly felt like a hero, but was so humbled to turn a corner and spot true celebrities like Marlo Thomas, daughter of St Jude founder actor Danny Thomas, or brilliant Ching-Hon Pui, MD, the man credited with successfully treating many children with leukemia.

The children in this story, of course, are the real heroes. There are only 50 beds in the hospital itself, as most of the work St Jude does is out-patient. Every child who is admitted never spends the night, all stay either on campus at the Grizzlies House or off-campus at the nearby Ronald McDonald or Target House. Their battles are difficult and often long, but St Jude provides amazing resources for every patient and their families. Families are never asked to pay a cent, insurance or not, amounting to a daily operating cost of $1.2 million a day. Yes, a day.

The team performed in the cafeteria during a busy lunch hour the first day, and spent a morning doing crafts with the children the next. Restrictions were placed on what I could and could not photograph, and for obvious reasons, most of the hospital was off-limits to our group. But on the third day, we visited the Target House (sponsored, yes, by Target, similar to the Kay Cafe by Kay Jewelers and Chili’s Care Center by Chili’s Restaurant) where we were welcome to hold and hug these brave patients and their parents. Again, the team performed their routine, but they also created craft projects and played Wiffle ball while their moms were treated to manicures and led through yoga poses. I zig-zagged between those spaces capturing the interaction and downright happiness that permeated throughout. I was high on a Disneyworld sense of disbelief that sadness ever resides inside those four walls.

Hope is infectious.

It took strict discipline to edit and post these photos for you to see, however, as every time I tried tears prevented me from getting very far. And although these photos will likely never win any awards or hang on the walls of anyone’s home, they will always have a special place in my heart and those of the St Jude Performance Team. I am so proud to have been a part of this journey, and forever grateful for the opportunity to document such a truly personal project.

Please enjoy a selection of my favorite photographs and a slideshow of this amazing trip below, keeping in mind there are frequent "you had to be there" moments I wanted to include for those on the trip to remember. Settle in... there are a lot!

Welcome to Memphis.

This is Stephen, Sherri's son, on our way to the hospital. Stephen's grandfather was the Chairman of the Board of Directors for ALSAC (the fundraising arm of St Jude), and now his father is. No pressure for filling those shoes in a few years, eh?

We started with a tour.

The walls were cheerful, but the tears from the waiting room caught everyone's attention.

A prayer plaque in the chapel.

Memorial Wall.

Alphabet wall. This broke me.

Sherri, her mother Mary Lou, son Stephen and daughter Elizabeth signing the 24 hour prayer book.

The lunchtime performance drew curious patients, staff and visitors.

After the show, performers mingled with the patients.

Later that night, we surprised St. Jude patient (and friend of the Performance Team) Katelyn Atwell and her mother Sharon at dinner. When traditional doctors told her there was no hope, Sharon took Katelyn to St Jude where she lived for 6 years- in a coma for one. Today, she's 22 and gives the best (longest, strongest) hugs ever! Read her story here.

Sherri shows us a letter from her daughter during dinner.

Day 2: back at the hospital.



Performers led patients in an arts & crafts hour: gimp or painted shoelaces.



Members of the high school team. I wish this group was around when I was in high school! Heck, I wish I lived closer to Nashua/Andover now to be a member!

I think I spotted everyone with a similar soulful glance during the trip. Here, performer Kelly with the statue of St Jude behind him.

Later that night we attended the ALSAC annual volunteer awards dinner. I loved seeing the tender interaction between performers.

Day 3: Target House, long term housing for patients and their families.

Seen in the parking lot.





Elephants are the theme of the Target House because of their instinctive nature to take care of each other and never leave a family member behind, even if sick. The walls of the main hall showcase elephants painted by celebrities.

There are Target shopping carts, used to help families move in and out. There are 100 2-bedroom apartments on the complex.

Meet Jack Pavlat. Jack and his dear wife Barbara lost their daughter Suzanne, a patient of St Jude, 7 years ago. They have since adopted the Performance Team, always attending the annual show in New England. It was so special to have them with us while in Memphis too (Jack is standing in front of the Jonas Brothers' performance corner at Target House). Learn more about Jack and Barbara here.

Performers spent the afternoon assisting the young patients and their siblings with crafts...

and manicures...

and yoga.

I was really emotional watching the patients' moms in the yoga class, seemingly witnessing the weight of their stress and anguish. This mom's bracelet says: WeRAwesome. Indeed.

Performance time! Sherri assembles the group in the cafeteria for a pre-lunch show.

This mom, hair newly braided in the "spa" session (I overheard her saying it felt like being back at camp to have her hair braided), watches with her adorable daughter (patient names not used to protect their privacy).



There are no words.





After the dancing, there was eating for everyone. We treated anyone who wanted to join us.





And then it was time for some ball. Treated like "regular kids," the patients loved playing with the performers who didn't fuss over their health.

This little boy (again, no names revealed) casually sat down next to parent volunteer Joe and put his hand on Joe's. No explanation, none necessary. It was so sweet.

Another sweet moment captured as I was in the restroom between a performer and a patient's sister. Siblings and spouses assume a difficult role of strength and support, and welcomed the attention and love from the team, too.

Sherri told me she loves knowing her children will grow up never feeling uncomfortable around sick children.

At the end of the day, we toured one of the apartments in the Target House. It was emotional for everyone to imagine a family with a sick child inhabiting these small quarters.



On our last night, we all convened in the hotel lobby to share stories and reflect on the trip together.

Back in Boston, there were lots of hugs.


If you've made it this far, here's what you'll see in the slideshow below:

Wednesday:
Logan Airport
Memphis Marriott arrival

Thursday:
rehearsal on roof of Memphis Marriott
tour of Danny Thomas/ ALSAC Pavilion
tour of campus & hospital
performance in cafeteria
Danny Thomas Memorial Garden
gift shop
trolley, dinner w/ Katelyn

Friday:
breakfast at Marriott
Danny Thomas Memorial Garden
crafts at hospital
lawn
Danny Thomas Memorial Garden
board meeting appearance
afternoon crafts
2009 ALSAC volunteer awards dinner

Saturday: Target House
tour
activities: crafts, manicures, yoga
performance in cafeteria
lunch
afternoon activities: Wiffle ball
tour of apartment
dinner at restaurant, trolley
group chat at hotel

Sunday:
early departure from hotel
Memphis airport
plane
Boston



To Paula, my dear stepmother and Memphis roommate, thank you for sharing your friends with me. It warms my heart to know you have surrounded yourself with such kind souls. And to Sherri and the Performance Team, thank you for making me feel so welcome and trusting me to tell your story. It was profoundly amazing, and I will be forever haunted of our trip... which is a very good thing! I love you all! xo

13 comments:

  1. Cancer sucks. But your kindness and commitment to this cause does not. Beautiful work and congratulations to the performance team for bringing such joy and hope to these families!

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  2. What a lovely, lovely post. I am in my office, praying no one will come in, as I hastily wipe tears away. There are no words....but thank you for documenting the trip so beautifully. Sending prayers out to everyone who is in some way coonnected with St Jude's.

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  3. Beautiful sweets! I am glad you were able to make the trip. I know that you were very touched by everything that you experienced! Cancer is part of so many people lives...it is great that the people of St Jude are doing something about it for these young kids. thanks for being you.

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  4. Anonymous12:51 AM

    Dearest Em, Thank you for sharing this beautiful post with us. It is a reminder of how precious life is and what wonderful friends we make along the way! Barbara

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  5. I love the way you captured so many sweet and touching moments on your trip. You've taken a phenomenal place and truly did it justice. Thanks for the shedding some light on a team that is obviously passionate about what they do and who they do it for.

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  6. Anonymous8:46 AM

    I am absolutely blown away by this post. As always, your talent for writing & photography shines through. I am sitting in my office with tears & a box of tissues. The pictures bring it all back. I too, will be forever changed by my trip to St. Jude's. Thank you seems insufficient to tell you how grateful I am to have shared the experience with you.
    Love you Em,
    Paula

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  7. Em- I'm super proud of you for taking time for yourSELF. I know it's tough to get away when you love your work, but it's so vital to discover balance (and give yourself permission to PAUSE)...thanks for sharing such a personal experience. Hugs!

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  8. Anonymous9:42 AM

    What a beautiful, caring, hopeful story. I am so proud of you always. You have shown us all to cherish each day and everyone we love, and to be there for others.
    Love you.
    Mom xoxoxox

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  9. Thank you for sharing this with us Emilie. The picture and story of the young boy who just put his hand on the volunteers totally got me. What an emotional trip!

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  10. I like to think of myself as a big tough guy and I had tears streaming down my cheeks by the time I got to "there are no words" Not many people know this, but my son MacDonald suffered a stroke at birth and has hemi-paresis. When we go the The Shriner's Hospital for his treatment and orthotics I leave with a lump in my throat that stays with me for many days. You just sit there and think to yourself that you would do anything to change places with any of these kids. A beautiful story on St. Judes. Thanks.

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  11. Emilie,
    I'm always inspired by your posts and hope that someday I can be lucky enough to have a job like yours! You're making the world a better place!

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  12. Emilie,

    You amaze me. What a touching story and it's pretty incredible that you and the team were able to be a part of something so special. I hope that Sam and I are able to make even a fraction of the impact you are making on this world.

    Thank you for sharing- not just the photos- but your words as well.

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  13. Emilie,
    I am so proud of you-though I donate money to St. Jude's, you being there and showing up, means so much more. As a mother, I cannot imagine what these children and their families endure. Thank you for this post. It makes me appreciate and be thankful for the people in my life who are healthy and to savor those who are not. You are an angel!

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